carbidopa-levodopa

[mthteach]

I would like to know how your relatives/patient has done when taken off the carbidopa-levodopa. Two different neurologists have suggested that I take my husband off it. I have not yet done it because he was in the research trials, and they require for him to stay on it while in the trial. He has been on it since he was diagnosed in 2013.

[jzygirl]

As soon as brian got his diognoses of psp they told us to ween him off it. He did improve. Janexx

[vlh4444]

My husband, also diagnosed in 2013, was on cocareldopa for about a year but all agreed he should come off it. We didn't see any noticeable difference. He did have a short period back on it just to see if it helped with the increasing muscle stiffness but it didn't seem to have any effect so he stopped it again.

I know some people seem to achieve an improvement while taking it but I really think there is no medication that helps and even eye drops, sleeping pills, pain killers etc only have very short term benefits. I certainly wouldn't be afraid to stop the carbidopa-levodopa.

Vicki x

[abirke]

B was taken off about two months after he was put on. I did not see a diffc. B said he felt that the drug stopped the palsy in his hand, which I didn't notice he even had! But he never went back on and I don't believe we lost anything.....

AVB

[easterncedar]

My guy was on it for a very short time early on, with no effect either on or coming off.

[steph02 in reply to easterncedar]

Same here I had no effect either on or off the drug

[Christine47]

My husband has been using for three years now 25-250mg three times/day with amantadine. He was given more and had a bad reaction ( hallucinations). It could have been a reaction to the amantadine, since he does take them together. The neurologist wants him to stay on it. It seems to be more of a "flip a coin" type of prescribing. Hard to know if it helps.

[aliciamq in reply to Christine47]

Jack has taken Carbi/Leva all along and amantadine. We think it is doing something. If "we" forget to take it, I can tell by the spacy, drunk man look. He just tried a higher dose of Sinemet for a day and it was a disaster - he could not stand!!!!!

[NannaB]

There didn't seem to be any difference when C stopped taking it.

X

[mthteach]

Thank you all for your posts.

[Kelly55]

Think it's highly individual the response.. Mum was on co beneldopa and stopping it increased leg stiffness and pain. Then after a few med reshuffles she's now on Stalevo 150 (GPs don't like to prescribe as its expensive but I'm insistent!) and her mobility seemed to improve a bit and no stiffness or pain. She's on a high dose but for now they seem to help ! no hallucinations or obvious side effects either. All I need now is for her to sleep at night !

[Doglinton]

C takes it and feels it helps. I don't know. Consultant says to continue.

C wants to continue. Jean x

[Tokki]

I was about to ask a similar question. Bugs was started on this last August, going up to a high dose but with no obvious benefit. She is now being weened off as it made her feel queasy all the time. The domperidone given to counter the queasiness did not help. In a week she starts amantadine. Are there any other drugs prescribed for PSP? And any side effects of amantadine to watch out for - the papers in the box normally warn of everything from dandruff to ingrowing toenails so are not much help.

[aliciamq in reply to Tokki]

Jack had the red mappy rash - alarming to see but no pain or itching and it eventually went away.

[sammy90210]

it's really important I join in - my dad was taken off carbidopa-levodpoda and he turned completely vegetative - he could not eat or drink or talk and couldn't even swallow his own saliva - his body turned stiff as a board and his back arched - when restarted, 1/8 of the normal dose per day brough him back to life - so it's really really important it's reduced slowly and very closely observed

[carlam]

My dad tried carbidopa-levodpoda when he was first diagnosed with Parkinsonism and it didn't seem to help at all with his gait/freezing issues so we discontinued it. We tried again when the symptoms were much worse and again didn't see any improvement. Finally the third time years later, when he tried again to see if it would help with the stiffness in his permanently crossed legs, we found it improved his ability to talk and his cognition, but still not with any stiffness or motor functions. He takes it 3 times per day. Tomorrow we are starting Amantadine because I saw it referenced on this site so asked his neurologist if we could try it.

[ketchupman]

Kim has had PSP for about 6 years now. I have probably taken her off and put her back on Sinemet about 5 or 6 times. At times I felt it wasn't doing any good or may be causing other issues. In the early stages, I could really tell a difference in her balance. While she was on it, she had fairly good balance, but without it, she walked like a drunken sailor. When her neurologist told me her body was shutting down in December and to bring in hospice, we decided to take her off again. She was pretty much in a vegetative state for the next 30 days. I finally decided to start her back mid-January and within a week, she started responding ... talking (whispering) and was able to ambulate around the house much easier (us locking arms around the waist). I kept increasing it until we hit her prior highest dose, which was 3 tablets, 3 times a day. But at that point, her REM Sleep Behavior Disorder went wild. At night, she would kick and SCREAM, yes SCREAM. So I started to lower her dosage of Sinemet and now we are down to 1.5 tablets 3 times a day and her sleep is much better now ... and so is mine!

And yes, if you are taking part in a clinical trial, they usually want you to be stable on any Parkinson drugs for at least 3-6 months. So you're not supposed to be adding anything new, taking anything away, or modifying current dosages. Of course, what they don't know won't hurt them.

Thank you so much for having your husband participate in a clinical trial. This is such a rare disease and not enough people are willing to participate. The drug companies are having a hard time finding good candidates.

Ketchupman

[mthteach in reply to ketchupman]

Ketchupman, Your description of the Sinement is the most detailed information that I have read so far. I did not know how much would be a large dosage for the Sinement. He is taking 1 tablet 3 times a day, but we always forget the meddle of the day pill. He has never taken more than one pill 3x a day.

The Neurologist told me that he might have MSA not PSP. I do not know if we are going to qualify for the research study now. I hope we can get in to see the MSA specialist before the deadline to get into the research study. It was the Brystol Myers Swab study, and that study is only for PSP patients.

[ketchupman in reply to mthteach]

Kim is on the 25-100 MG, which is what most people are. I've heard of some people taking up to 5 tablets, 3 times a day. Of course, you should normally get your physician's blessing. We too, often forget the mid-day dose. And with Sinemet, you're really not supposed to take it when you have anything on your stomach (I think mainly protein). It's a complicated schedule, where you have to take it so many minutes before or else so many minutes afterwards. Most of her other meds didn't have that restriction or even required it to be taken with meals. So it's much easier to take at meal time. But to be truly effective, we probably should have followed the proper guidelines. PSP, MSA, and CBD are all so close together and lookalikes. I lead a support group for the atypical Parkinson's in Louisville, KY. I've had a couple people with MSA and with CBD, but all have either stopped coming or have passed. I now have only men, mostly in their early 70's who have PSP. CurePSP.org has a lot of info on all 3 of these diseases. Hoping you might visit there and find out more about them. They also have info on available clinical trials through their PEP (Patient Engagement Program).

Take care.

Ketchupman

[abirke]

We volunteered......They didn't volunteer back! granted.....I did not force the issue....

[ketchupman in reply to abirke]

I usually had to pester them with frequent emails and phone calls. I can be a real pain. Ask anyone.

Ketchupman

[kryste]

If he is already taking it slowly wing him off see how he does sometimes it produces to much dopamine and can make them dissy , high looking and a little confused its like us drinking 12 cups of black coffee I had to take aunt bev off to get her dosage right she was lathargic at first but then I just slowly started giving it back to her till she was normal feeling . good luck

hugs Kryste

[Mnd0vrmnky]

Hi everyone.

I'm currently reading the magnesium miracle by Carolyn dean md. She reckons everyone has a magnesium deficiency and I would highly recommend everyone read it. There's a lot of good info in it. Magnesium is a big part of how the muscles tighten and relax so it should be of benefit to everyone with these conditions. There are other interesting bits of info too. Like how blood thinners work by removing water from the body, thickening the blood and dehydrating the brain. Magnesium in contrast relaxes the veins and arteries reducing the pressure in a safe way. There are other interesting points about how other meds can reduce the amounts of magnesium in the body too.

Plz read this book or check her out on YouTube.

Peace

[mthteach in reply to Mnd0vrmnky]

Have you talked to your loved ones neurologist about giving them magnesium for PSP or MSA to help with muscle.

[Mnd0vrmnky in reply to mthteach]

When I asked his doc several months ago he said he was happy for us to take any supplements. But I didn't ask him about mag. My dad is taking a mag pill (300mg) everyday just now however. I did try to contact his neurologist recently but they didn't respond. We will try again soon though. My mates dad is a doc who had a MSA patient in the past though. I'll be speaking to him more and more as we go.

Im gonna get all my ducks in a row before I go to his doc and get permission for him to take the things I'm researching.

The plan is to draw the heavy metals out and give him organic foods, supplements and natural anti Biotics/anti inflammatories/anti oxidants.

If we were to test him for mag deficiency, via blood test, it wouldn't show up because magnesium is drawn from the muscles/bones to maintain mag lvls in the blood. The more I read the less I respect the docs opinions tbh. They are taught about drugs not minerals. But I will require their blessing before my dad agrees to take anything significant. He is still on levodopa which I'm trying to put a stop to.

When the system has too much magnesium it stops absorbing it by way of diarrhea.

Peace

[Clahey]

My Wife was taken off of Levadopa, and developed Neuroleptic malignant syndrome (Parkinsonism HyperPyrexia Syndrome.. she was unable to eat, had a high fever, stiffness and pain in of all four limbs. Her ability to talk and drink was diminished an eventually extinguished. They used sedation for the pain, and she died.